Overall our flight to Beijing was good, we had packed for just about every imaginable scenario and had to be creative to allow it all on the plane. Our carry-ons took up 2 1/2 overheads, luckily the flight only half full... We also enjoyed the bulkhead seats, the extra space allowed room for Thomas' potty (which he refused to make use of) and after dinner Thomas and I did a bit of physio - squats, standing and stretching to move circulation. Sleep unfortunately didn't come easily to either one of us, Thomas slept a total of 5 hours and I drifted in and out of 2. Our real difficulties began when we arrived in Beijing, there were many complexities involved in the transfer of flights. While manoeuvring Thomas in his stroller, his potty and 3 other carry-ons, I had to route us thru security, embark a train to meet our carrousel, then with 4 more pieces of luggage, find a bus to take us to terminal 2 to catch our plane - all of this had to take place in 90 mins, I was panicked! Thankfully I had Thomas' full cooperation and that of of a few good Samaritans who spoke very little to no english. Throughout the mayhem, I inadvertently left Thomas' walker in Beijing, realizing about halfway to Qingdao. We made it, and that was all that mattered, I was quite relieved and throughout the chaos, I actually enjoyed my few first glimpses of China. We were happily met in Qingdao by hospital staff and for the 1st time, Thomas rode on my lap without a seatbelt. Safety, I was told, was not an issue because drivers don't drive fast enough to hurt each other! When we arrived at the hospital, I desperately wanted to be left alone to unpack a few things and sleep. Instead, we were met by the medical team who wanted to get down to business and an interpreter who facilitated the conversation and then proceeded to go thru a brief orientation, not my most attentive meeting. When we finally got to bed at 10:30, I experienced a severe headache which I recognized right away - it was 10:30 in the morning and I usually had about 3 lattes by then, I was going thru withdrawal...
Our first day, Saturday, was filled with a series of medical exams (blood work, samples, EKG, cardiogram) Thomas' physio assessment and a trip to the RT Mart (a bit of a Wal-Mart with more groceries). I was still lacking caffeine and sleep and I proceeded through it all much like a zombie. Thomas' video assessment was poor, his gross motor skills had lapsed and because he too was tired, his balance was off. His movements were also jerky and he kept throwing himself around. This might have been due to his lack of mobility in the past 2 days - I could not put him down because the floor surface was not safe, so he was restricted to his stroller unless we played on my bed together. I was completely limited in letting him out of my sight/grip, his immobility bothered me as did his assessment, awakenings you get that signal your child's challenges, which can get you down. When we went shopping, I looked desperately for floor mats but there were none to be had, and our trip was also cut short, so I had I had to put it off another day. One thing I did manage to acquire was an electric adapter from Barbara, a fellow patient, so was able to grind coffee beans I had packed (luckily b/c good coffee is difficult to find). Thomas and I ordered a vegetarian pizza that night which ended up having potatoes and corn on it (yuk!) but we managed to get to bed at 7:30 and finally had a decent night's sleep...
The next day, Sunday, things began to fall more into place... I managed to drink some coffee and purchase 20 floor mats for our room - $18, which is a bargain. I was unpacked and somewhat settled in, Thomas was out of my constant grip and crawling around, playing with his toys and I even managed to cook him a chicken dinner. We also received our schedule for the week:
9:00 AM: Medical Consultation
10:00 AM: Physio, followed by 1/2 hour of weight bearing in stander
2:30 PM: Electric Wave Therapy, followed by Acupuncture
WEDNESDAY: Stem Cell Treatment by IV
SUNDAY: Stem Cell Treatment by Spinal Injection
There were many specific instructions associated with the spinal procedure and Thomas would need to receive a general anaesthetic prior to, which I was hoping would not be the case. As a result, he will not be able to eat/drink several hours before and after and due to the likelihood of nausea/pain, he would have to lie still for 6 hours following treatment. We discussed this at length, and despite my concerns there was too much probability/risk that Thomas would not cooperate without the general anaesthetic. They also flagged the possibility that Thomas could undergo seizure activity as a result of the treatment, and if this was to happen, they would insist on the IV procedure, which is not as effective. I became very aware that this was not going to be easy and while I signed off on the waiver with all the potential side effects, a new level of reality set in and I momentarily questioned myself. It was a short term feeling however and I knew the benefits far outweighed the remote risks ...
Monday morning, Thomas' therapy began with Tom and I immediately liked him. He was soft spoken, gentle, yet confident and being one of the older therapists, knew his stuff. Frank, the interpreter immediately confirmed this with me and also added that Tom thought Thomas to be brighter, more responsive than most kids who had come for treatment and I could tell that he liked him too. He would often grab Thomas' head and bring his lips to his forehead, falling short of a kiss and maybe not even making contact. I took that as a cultural sign of affection. Tom's physio therapy and later that day his electric wave therapy and acupressure (not acupuncture b/c Thomas would likely not keep still) all stemmed from traditional chinese remedies of relaxing the muscles with lots of massaging, increasing the energy and improving the immune system and the ability to self heal. It was intriguing and too early to tell if effective on its own, but maybe in combination with stem cells, a winning combination. Like all therapies, you wait and see. Thomas also did specific exercises in sitting and transitioning from laying to sitting (both back and front) and squatting for a duration to reinforce ankle positioning. Following therapy, Thomas was placed in a stander for 30 mins to weight bear and it didn't take long for him to engage therapists/passersby into throwing him the ball. Again, there was a concern expressed of potential seizures so the electric waves were set to low. Thomas overall participated well, he gave his usual instructions of being "done" throughout and "off" with the stander straps and electric wave therapy nodes.
Today of course was the climax of the week, Thomas received his 1st stem cell treatment by IV. He was feeling tired, so I placed him in his bed to rest before their scheduled arrival at 1 p.m. I sat next to him and said my prayers, they were emotional and I again felt nervous for him, and deep sympathy/guilt for what he had or rather for what I had to put him through. When the nurses arrived to place the IV in his hand, he screamed and cried as I held him and tried to take away his pain/fear. Finally after two attempts, his IV was in place and we proceeded upstairs. Thomas and another 8 year-old Chinese girl who was close to being blind shared their first stem cell treatment. Her mother's english was good and we chatted thru the 40 mins procedure and Thomas did fine. He was very thirsty afterwards and guzzled his water then amused the crowd with his burps (he at least said excuse me). Later when we arrived back to our room I put him on the potty and as he leaned over my shoulder he had a big spit up. I paused for a moment then rationalized that this wasn't completely unusual for him, esp. with a full stomach of liquids. I had to keep a good eye on him for any side effects from the treatment. Thomas would have to be kept in our room for 2 days so I began our stay with an invitation to join me on my bed for some popcorn and we later broke open a bottle of coke that was delivered with our pizza days before - we were going to have a bit of a party to celebrate his 1st stem cell treatment. Later, we downloaded my pictures but he soon tired of that and wanted down. I played one of his CDs and observed a very active boy at play, he seemed almost hyper, but maybe it was the few sips of pop...? I couldn't be sure, but he certainly came alive. He was singing and what appeared to be a bit of a dance as well. Soon thereafter, he insisted on how hungry he was, so we had dinner, some leftover chicken and some take-out pasta. I was less surprised when I opened the spaghetti container and discovered a mix of corn in it. All in all, his bed-time routine was uneventful, he seemed quite himself and very tired from the day.
Winding down week 1, am overall impressed with the level of service here, the team visits from the medical staff include about 6 people, always an interpreter present, Thomas' temperature and blood pressure checked several times a day. There are many other staff tending to a variety of patient needs. The cleaning staff appear throughout the day yet always perform a single duty at at time (i.e. empty garbage, later clean down your bed, another time sweep your floor). They were successful in tracking down Thomas' walker and cater to people's food and laundry needs.
Some of the headaches revolve mostly around language and logistics with the community kitchen - I think they prefer you order out and it's actually quite affordable to do so. Their internet was down when I arrived, it continued to be for 3 days and it had been down 3 days prior, so outside contact was and can be challenging. There is also smoking allowed in the building, but not on our floor, however it's not monitored well and you can definitely smell it. There are challenges with any electrical you bring from home even with an adapter, although one family brought a great converter, which I borrow all the time. I am pretty sure that I ruined Thomas' monitor and my clock radio (what was I thinking?). Coffee is still a bit of a challenge, one woman is having some Starbucks beans fed-exed from home in Colorado! It's different for sure, but I think we are now adjusting well. I am mostly excited about the possibilities for Thomas, this I continue to pray each day for an exceptional outcome and so far I have no reason to expect anything less...
